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Table 4 Univariate analysis for the BCFQOL Scale and coefficients (n = 149)

From: Impacts of caring for a child with the CDKL5 disorder on parental wellbeing and family quality of life

Measure Number of observations Family interaction Parenting Emotional wellbeing Physical/Material wellbeing Disability-related support
  Mean (SD) 4.22 (0.71) Mean (SD) 4.15 (0.72) Mean (SD) 3.50 (0.97) Mean (SD) 4.32 (0.70) Mean (SD) 4.13 (0.77)
Parent’s age 143      
 Under 30 years 11 Reference Reference Reference Reference Reference
 30 to 40 years 75 −0.18 −0.13 0.07 0.07 −0.51**
 40 years or over 57 −0.45* −0.34 0.06 −0.06 −0.71**
Parent’s qualification 137      
 11 or 12 years of school 24 Reference Reference Reference Reference Reference
 TAFE/Technical certificate 28 0.18 0.10 0.05 0.36* −0.11
 University degree 85 0.13 0.07 0.07 0.28* −0.11
Parent’s work status 138      
 Full-time homemaker 58 Reference Reference Reference Reference Reference
 Part-time employment 34 −0.21 −0.32** 0.18 −0.19 −0.24
 Full-time employment 46 0.03 −0.06 0.29 −0.03 −0.24
Number of siblings 147      
 0 29 Reference Reference Reference Reference Reference
 1 64 −0.10 0.09 −0.17 0.13 −0.03
 2 or more 54 0.04 0.20 −0.10 0.25 0.11
Child order 147      
 The first child 63 Reference Reference Reference Reference Reference
 Laterborn 84 0.00 0.10 0.06 0.17 0.05
Child’s age 149      
 Under 1.5 years 21 Reference Reference Reference Reference Reference
 1.5 to 7 years 67 0.06 −0.11 −0.32 −0.11 0.09
 7 to 13 years 38 0.00 −0.12 −0.35 −0.11 0.05
 13 years or over 23 −0.21 −0.34 −0.28 −0.36* −0.09
Child’s gender 149      
 Female 128 Reference Reference Reference Reference Reference
 Male 21 0.13 0.07 0.00 0.01 −0.12
Child’s country of birth 149      
 North America 87 Reference Reference Reference Reference Reference
 The United Kingdom 12 −0.02 −0.09 −0.05 −0.20 −0.25
 Australia and New Zealand 13 −0.29 −0.48** −0.21 −0.45** −0.19
 Western Europe 26 −0.51** −0.52** −0.43* −0.46** −0.61**
 Others 11 −0.01 −0.18 −0.30 −0.32 −0.22
Mutation group 149      
 No functional protein 46 Reference Reference Reference Reference Reference
 Missense/In-frame mutations 36 0.10 0.03 −0.16 0.01 −0.16
 Truncations aa172 to aa781 45 0.05 −0.06 −0.16 0.02 −0.08
 Truncations after aa781 12 0.07 0.06 0.11 0.16 0.06
 Mutations not grouped 10 −0.01 −0.17 −0.06 −0.13 −0.31
Feeding pattern 144      
 Oral intake only 107 Reference Reference Reference Reference Reference
 Combination use 14 −0.13 −0.16 −0.04 −0.34* −0.10
 Enteral nutrition only 23 0.21 0.15 0.15 −0.02 0.06
Dietary concerns 117      
 None 57 Reference Reference Reference Reference Reference
 Occasional 38 −0.22 −0.34** −0.40* −0.40** −0.32**
 Frequent or constant 22 0.18 −0.20 −0.02 −0.14 −0.20
Floor sitting 123      
 No assistance 77 Reference Reference Reference Reference Reference
 Some assistance 13 0.07 0.07 0.29 −0.04 0.22
 Maximal assistance/unable 33 0.17 0.19 0.15 0.06 0.15
Taking 10 steps forward 20      
 No assistance 26 Reference Reference Reference Reference Reference
 Some assistance 17 0.15 −0.05 −0.03 −0.07 −0.04
 Maximal assistance/unable 77 0.16 0.01 0.06 −0.02 0.01
Eye contact 139      
 No 71 Reference Reference Reference Reference Reference
 Yes 68 −0.10 −0.11 −0.19 −0.09 −0.05
Communication 123      
 No/Simple method 42 Reference Reference Reference Reference Reference
 Complex gestures/vocalisation 57 −0.16 −0.18 −0.38* −0.16 −0.24
 Sign/Spoken language 24 0.06 0.10 −0.02 0.19 0.18
Seizure frequency 138      
 Absent 12 Reference Reference Reference Reference Reference
 Yearly/Monthly 15 −0.28 −0.15 −0.07 −0.25 0.12
 Weekly 25 −0.29 −0.03 0.14 −0.19 −0.03
 1 to 5 times a day 62 −0.15 −0.00 0.11 −0.09 0.09
 At least 5 times a day 24 −0.11 0.14 0.39 −0.06 0.22
Sleep difficulties 136      
 1.00 to 1.50 (1st quartile) 34 Reference Reference Reference Reference Reference
 1.50 to 1.81 (2nd quartile) 37 −0.24 −0.23 −0.42* −0.33** −0.37**
 1.81 to 2.17 (3rd quartile) 32 −0.19 −0.20 −0.34 −0.07 −0.14
 2.17 to 5.00 (4th quartile) 33 −0.34* −0.34* −0.57** −0.41** −0.39**
Hospitalisation rate 139      
 0 to 0.38 (1st quartile) 31 Reference Reference Reference Reference Reference
 0.38 to 0.86 (2nd quartile) 36 0.19 0.17 0.13 0.15 0.25
 0.86 to 2.14 (3rd quartile) 35 0.01 −0.09 −0.42 −0.07 0.15
 2.14 to 13.70 (4th quartile) 37 0.20 0.35** 0.06 0.07 0.16
Respite care 140      
 None 37 Reference Reference Reference Reference Reference
 Formal only 21 −0.27 −0.18 −0.56** −0.16 −0.15
 Informal only 35 −0.12 −0.19 −0.37 −0.27* −0.31*
 Both formal and informal 47 −0.50** −0.35** −0.24 −0.34** −0.44**
Financial difficulty 137      
 No 76 Reference Reference Reference Reference Reference
 Yes 61 0.03 −0.09 −0.57** −0.22* −0.09
  1. *p < 0.10 **p < 0.05